Neurological referral M.E and M.S?

New diagnosis and before diagnosis
1

Hi all,

I am newly registered here but have often ended up here over the years due to my symptoms.

Im not even sure of the purpose to my post, feeling a bit scared or unsettled I suppose… I was diagnosed with M.E around 15 years ago after severe fatigue and other bits that never left after Glandular Fever.

I’ve lived and managed with it (with difficulty) having been to university, holding a full time job and managing exercise but no energy for a social life around these! Most days are like torture in the fatigue sense but know I’ve been lucky as some are a lot worse affected.

5years ago I started with throat problems mostly pain and inflammation and was diagnosed with recurring tonsillitis and had a tonsillectomy (which has only helped slightly) throat issues are a symptom of ME so nothing concerning. Around this time the weakness and muscular twitches and burning sensations really started (although I think I had them before this but lots of things I don’t know if they’re normal or not because of the M.E and just ignore them).

Over the years I’ve woken up with blurry eyes that lasted 3 days but only in part of my vision, painful chest pressure sensation that lasted weeks along with constant tingling, popping, vibrating, fascilations and now actual spasms and by muscles constantly tending on their own and having to force them to relax. I have diagnosis also now of RLS and PLMD. Things have definitely focussed more on the left side of my body which initially I didn’t notice so much just felt like everywhere. Around 2 weeks ago I woke up and my left side of my face felt droopy and slightly numb but when I looked in the mirror it looked fine, this went on for a week worse in mornings and then my left side of my lip would start twitching at night I get random cold patches on my body (that cold wet feeling) Also noticed urine urgency/weak bladder which seems to come and go and feeling like I was slurring or difficult speaking although husband said I sound ok. (Any normal person would probably have been in A&E at this point but I’ve gradually become conditioned to all sorts of things. Does anyone else feel like this?)

After a week of this (I always leave things as like I said ME and try not to go to DRs with every issue) I phoned the DR spoke over phone and had a physical appointment, I had to wait outside in hot car for around 5 minutes (heat makes my body fall apart for a while). In the appointment I had various tests which I’ve had before, on this occasion I showed Hyperreflexia on my left leg and right wrist which I’ve never had before they went crazy jerking (clonus?) for a while after being tapped.The doctor also said my right foot was weak even though I felt like I was putting the same force on her hands as the left. I also had twitches and fascilations while there, couldn’t stand on tiptoes and walking my heel to toe made me really wobbly which I’ve never noticed before during these tests.

I’ve known for a while things aren’t right and are beyond my usual M.E feelings although I and doctors have just put random things down to this before, the fatigue is so horrendous, worse and more unrelenting than I’ve experienced and the weakness and sensations too.

I’ve been referred to a neurologist which could take a very long time due to Covid so have paid to do a video consult privately but am feeling very anxious which isn’t like me, I think the Hyperreflexia was quite disturbing for me, I’ve had these tests before and not noticed anything significant but could be due to sitting in the hot car before hand. Can Hyperreflexia ever not be a sign of neurological issues? The doctor looked surprised and did it a few times she didn’t tell me her thoughts though just that she was referring me.

looking back over the years I just feel like my body has been slowly falling apart and I’ve ignored it, I haven’t posted everything as the list is so long, IBS turning into appendicitis (still have ibs) weak bladder,migraines, clumsiness (at an all time high!) and brain stuff like math skills and conversational and spelling/typing issues etc.

Does anyone have similar issues? Would be interested to hear from anyone else who has M.E and this experience also.

Thanks and sorry if this post is really long and confusing I’m writing without knowing what I want to say or ask if that makes sense!

xx

2

Hi - I thought I would pop on and say I am sorry that nobody has thought to respond to your post, until now, Well you have been going through it and a lot of the time just ignoring the symptoms and ploughing on with life as best you could. Seems like things are catching up with you now and that is maybe only a good thing by the way you describe what you are coping with! I think hyperreflexia is related to neurology yes, but so your reactions were a bit over-active - hey that is not a death sentence you know!! And it does not mean that particular muscle group will always react that way. Could be different on a different day. Seems like a good idea you have this video link coming up. Could you have a think beforehand what you hope to get out of that and maybe note down one or two questions in case anxiety gets the better of you? Then you can come back and let us know how that went or feel free to message me. Maybe one or two will start to pick up on this for you. Try to take it easy.

3

Hi there

I was diagnosed with Fibromyalgia quite a few years ago and am currently at the same position of you waiting to see the Neuro due to a major flare of symptoms that are not (now agreed by my Doctor ) Fibro symptoms. I have in the past seen Neurology with similar symptoms but due to getting lost in the system wasnt followed up with.

It is a worry but not sure if you have experienced it but over the years if I have voiced concerns (and like you have tended to not contact the GP’s unless absolutely necessary) and it has been put down to the fibro without investigation apart from the one neuro one which ended with no results but an assumption that they were clear so no follow up!

I would be interested to know how it goes with your video consult. I am expecting a long wait to see a neuro so I am interested to see what yours say in relation to you having M.E. and what they suggest.

Feel free to message me if you want

x

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Wow, all so familiar. M.E is neurological condition and so is Fibromyalgia, I have been learning all new stuff over past years and talking to a different neurologist. My neurologist suspects both M.E and Fibromyalgia with me, but now thinks it may be wrong. I have had 17 years plus of fluctuating illness but the end of 2018 I went down hill and progressed so fast. Awaiting a full spine MRI and another spinal tap, they have been monitoring lesions on my brain for 11 years now. I really do hope you get to the bottom of what’s going on. Please read this link, So many have been diagnosed with M.E to later go on to an MS diagnoses. Please do keep safe. People diagnosed with M.E to find out later it is actually MS. - Everyday living - MS Society UK | Forum

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how are you now?